What experiences do we share, and what barriers confront us? Is it possible to replace our contemporary, medicalized culture with something more representative of us as complete beings? Are we ready for a real sense of community yet?
I think so.

May 8, 2009

How much can a head of hair weigh? Is it enough to cause your neck from being able to hold your head up straight? I have heard that hair can weigh from .5 to 3.0 ounces an inch--- how heavy is that, really?

When I was a girl of eight, about 1960, my Mama went to see a neurologist about me. She patiently explained to this demigod about my epilepsy and about the seizures I had. She also told him that I often had seizures when she brushed my hair. She explained that I had shoulder-length red hair, and that I could not reach to brush it myself, so she did it nearly every morning.

"Hmmmmm", said the demigod. He seemed very interested in my hair. In his most serious and convincing tone of voice he said "I see the problem--- her hair is too heavy for her head. It will have to be cut off and kept short, if you want to relieve her seizures. The weight of the hair is creating too much pressure on your daughter's head and it is causing her to seize."

Mama thanked the man and returned home. She had been very impressed with the way he assessed the situation without even seeing me.

She went to a drawer in the bathroom and got out her scissors. She waited for me to come home. She called me into the kitchen told me what the doctor told her, and then, like lightening, moved in for the first snip.

"Well", she said looking at one of my braids that had fallen to the floor, "we can't leave it like that!" so she snipped off the other braid. Then, she ran a comb through my hair and cooed that it would be much easier for me to take care of now... Over the next fifteen minutes, she trimmed and fussed and played with my hair until she finally handed me a mirror and pronounced that she had given me a "Pixie cut".

I was 25 years old before I let my hair grow out again.

Because a doctor had said it was the way to control my seizures, I firmly believed that long hair would cause me to have more seizures, so in spite of my adult defiance, I began preparing, waiting for the next seizures to strike.

Today, my hair is down the middle of my back. Still naturally red, although I am waiting for it to turn gray. But I cannot help wondering what Mama was thinking when she listened to the doctor who said my hair was too heavy for my head?

May 7, 2009

Illness personal narratives are, by their nature, sad, grim tales told by sufferers. Being around those who suffer can be nearly as unbearable as the actual suffering itself.Even reading about suffering can take its toll.So, in an effort to keep the dialogue going about E. without causing my readers to suffer too deeply, I offer a glimpse into one of the human being’s best coping strategies: humor.

Do people with E. have a sense of humor about themselves? Yes. Do we use it to give ourselves a break from our own illness experiences? Absolutely.

Humor specific to a topic or activity, it relates to experiences we share through E. and it offers the same value all humor offers: insight.

You know you have epilepsy when there are two cars in the driveway and you don’t drive.

You know you have E. when...someone asks you if you're alright & you didn't know anything was wrong.

You know you have epilepsy when you find yourself eating lunch for the second time in a row.

You know you have epilepsy when your dentist worries about losing his fingers...

You know you have epilepsy when you can decipher the following: I was dx'd with JME by my epi with an EEG, (had MRI and CT), Rx was Lamictal 100 mg p.o. tid, which controlled the jerks, absence, SP's, atonics, and GTC's...

You know you have epilepsy when holy water burns you.

You know you have epilepsy when your roommate doesn't know whether to call 911 or a Priest.

You know you have epilepsy when your Meds cost more than you make in a month.

You know you have epilepsy when you take meds to help the meds you take.

You know you have epilepsy when upon having a burst of energy you're asked "are you having a episode?"

You know you have epilepsy when...you have a seizure in your sleep and smack your spouse...and they ask ...was that a spell or are you still mad at me ?

You know you have epilepsy when...Sleeping till 3:00 pm is normal...yet not sleeping at all is too.

You know you have epilepsy when you hear ten times a day from your loved ones…did you remember your "pills"

You know you have epilepsy when your significant other pats himself on the back for his prowess that night and you have no recollection for the event...

May 1, 2009

As we step into the brave new world of the 21st century, some notions from the 20th century still linger. One of those notions, eugenics, has to do with the "self direction of human evolution".

A common comment I hear from within our community comes in the form of a question: Can you inherit epilepsy?

Until recently, I had not fitted the pieces of

the puzzle for this question together. When one

asks if the source of E. is hereditary, what one

seems to really be asking is whether or not it can

be "caught" by one's progeny from a parent.

If one considers the question more deeply,

one can begin to see a connection between the medical model

and fundamental eugenics philosophy: in each case, it is the disabled individual who is the problem and it is her

disability we are anxious to cure. Either by medicalized re-mediation or via genetic exclusion. Something they feel needs to be redirected or reshaped for a better future, I suppose.

Rather than seeing society as placing obstacles in the path of the disabled' participation and inclusion,

those who still hang on to these outmoded explanations continue to segregate all of society into an

us versus them reality.

Many of us are at least vaguely aware of Professor Singer, the Australian professor who has come close to equating

disabled children with the concept of the "useless eater". Singer's support for euthanizing disabled babies could lead to disabled older children and adults being valued less as well. When Peter Singer attempted to speak during a lecture at Saarbrucken he was interrupted by a group of protesters including advocates for the handicapped.

He offered the protesters the opportunity to explain why he should not be allowed to speak. The protesters indicated that they believed he was opposed to all rights for the handicapped. They were unaware that, although he believed that some lives were so blighted from the beginning that their parents may decide their lives are not worth living; in other cases, once the decision is made to keep them alive, everything that could be done to improve the quality of their life should, to Singer's mind, be done.

So is this the same thing as feeling an intrinsic value for all human beings or is Dr. Singer thinking of a social redirection??

Yet, via Singer's utilitarian approach, he does seem to leave open the door to the possibility that

society can and should look to the future and make every effort to reshape that future.

But what do we do about the ordinary folks who have a distinct fear of our numbers increasing?

Take for example the case of the mother in Britain who wanted her daughter's sex organs removed to prevent

her going through the discomfort of menstruation--- I don't believe this to be the real "interest". What I believe, no matter

how immaterial, is that the mother had grown more and more anxious over the notion of unwanted pregnancy than

anything else...

A mother is seeking to have the womb of her severely disabled daughter removed to prevent the 15-year-old from feeling the pain and discomfort of menstruation.

Doctors in Britain are now taking legal advice to see if they are permitted to carry out the hysterectomy on Katie Thorpe, who suffers from cerebral palsy.

But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a "disturbing precedent."

Andy Rickell, executive director of disability charity Scope, told the Press Association: "It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie's best interests.

"This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people's human and reproductive rights.

"If this enforced sterilization is approved, it will have disturbing implications for young disabled girls across Britain."

How do we feel about disabled sex and reproduction? As a society, there are those who have strong feelings against disabled sex and reproduction. I know as a woman with E., I was warned all my life that I would never be able to have children and that I should never have children.

To my mind, the warning could have been more distinctly articulated: something more like: don't have children unless you can care for them, unless you are married or have employment or the like. The same kinds of warnings parents make to their non disabled kids.

Certainly, I have taken this piece a little far afield, but I guess my point is still a simple one: I am happy to be alive and I don't want to be engineered out of existence, by anyone.

If the day ever comes when someone wants to know whether to let me die "with dignity" or continue living my "blighted life", what I "would want for myself" is to be left alive--- I must say that I am, under no circumstances, in favor of euthanasia, nor would I ever sign a DNR for myself. Too many people have been too anxious for too long to get rid of us to ever let me see "mercy killing" as an option.